In my previous post, I explained that losing nearly all the muscles in my hands and arms and taken away my ability to hold the camera and press the shutter. Today I am happy to report that my occupational therapist has created a system that attaches to my wheelchair and restores my ability to do photography. Actually, it turns my wheelchair into a rolling tripod. Couple that with the ability to tilt, elevate, and roll, and my new system gives me more capabilities for taking stills and videos than before. Please watch the video below to see how it all comes together.

Recently I have not had much to say. No, let me correct that. I have not been saying much. I do have a lot to talk about, however I am trying to make some more adaptations to keep up with the progress inclusion body myositis is making on my body. The effects are especially noticeable on my hands and fingers, shoulders, and the ability to speak, sing and swallow. I recently got approval to go on home health and have started receiving regular visits from a speech therapist, occupational therapist and physical therapist.

Not only are my hands and fingers week, they are nearly frozen in one position. this has caused me to temporarily give up photography altogether. Some of you may recall that in the beginning I was using either my iPhone camera or my GoPro camera which was controlled by my iPhone using the GoPro app. I can no longer hold the iPhone in my hand and use my other hand to touch the screen, so that rules out both of those methods of taking pictures. My occupational therapist is working with me to try to find a system that will solve this. When he does (and I am sure he will; he is very clever and persistent) I will do an article about the method used.

My occupational therapist is also working with me to expand upon a scheme I devised to restore some movement in my fingers. I played the piano from the age of three. It was one of my great pleasures and a favorite method of relaxation. IBM took that away from me several years ago. There is a piano in the common area at my assisted-living facility and occasionally I peck away with the one finger of my right hand that is still strong enough to press a key. So I decided to purchase an electronic keyboard, a Yamaha PSR E443, that would always be waiting for me in the “office” of my assisted-living apartment. My theory was that I would be so motivated to produce music that I would play it often and perhaps expand my ability to move the fingers on my right hand. Even more ambitious, I was hoping to be able to use at least one finger on my left hand to take advantage of the auto accompaniment function of the keyboard. However, the extreme weakness of my left shoulder prevents me from using my left hand unless I lean to the right and lock my shoulder in place. Doing that leaves me unable to use my right hand. After working with my keyboard about one month, my right hand acquired enough dexterity that I can play two notes at once using the index and middle finger and then add a third note with my thumb. This is a major increase in hand function and it is also paying off with things as simple as picking up an object from my desk. I am also now able to use two fingers on my left hand, although I have not been able to overcome the problem of lifting that hand and using it in conjunction with my right hand. My occupational therapist believes this is a therapy worth pursuing and he is now working on a system that might allow me to make more use of my left hand by supporting my left arm and leaving my hand free to move. If this works out, it will also be the subject of a blog post.

My physical therapist is trying to loosen up my neck muscles which are so tight that I can no longer turn my head enough to see behind me. This is a big problem when you need to back up a 350 pound wheelchair. My speech therapist is working with me on strengthening the muscles used for swallowing and is teaching me ways to avoid further damage to my weakened vocal cords.

Early next year, I will let you know how everything is going. Meanwhile I wish you all a good holiday season and an even better New Year.

]]>http://lifedisabled.com/2014/12/23/my-hands-are-holding-me-up/feed/8As Long as You’re Up…http://lifedisabled.com/2014/10/19/as-long-as-youre-up/
http://lifedisabled.com/2014/10/19/as-long-as-youre-up/#commentsSun, 19 Oct 2014 15:39:54 +0000http://lifedisabled.com/?p=1668[...]]]>Some more advantages to using an overhead lift together with a hygiene sling.

This simple device could save huge amounts of time and discomfort for people who are non-ambulatory and those who must care for them.

In addition to lifting someone safely and easily, an overhead lift offers some additional benefits. You might compare it to taking your car in for an oil change. Just like they put your car up on the rack to have easy access, the caregiver also has easy access to otherwise hard-to-reach areas of the person being cared for. Besides post-toileting hygiene, this helps with skin checks, skin care and changing underwear.

Changing underwear? Here’s how: while the patient is being suspended by the lift, pull the underwear around the bottom and toward the knees as far as possible. Lower the patient back down to a seat. Unhook the leg straps from the overhead lift and then bring them back up, passing them between the underwear and the seat. Lift the patient again and let the shorts fall off. Put a clean pair over the feet and legs and lower the patient once again. Unhook the leg straps from the lift. Pull the shorts as far up as they will go. Put the leg straps on the lift again, being sure they are on the outside of the shorts. One last time, lift the patient and pulled the shorts the rest of the way on. Lower the patient back to the seat and the shorts have been changed. (The process takes a lot longer to describe that it actually takes to accomplish.)

I designed and sewed pants that I could put on by laying them on the chair and fastening them around me.

What about the outer wear? Some people use open-bottom garments that are specially made for wheelchairs. Personally I prefer the type of pant that I designed which simply lays flat on the wheelchair seat and I am lowered onto it. Then it Velcros in three places – along the legs and down the front to form a complete pair of shorts that look exactly like a regular garment.

If you are not yet convinced, maybe a demonstration will help. In the interest of public decency I decided not to be the model for this brief video.

Jeff Conner, President and owner of Pacific Mobility.

Special thanks to Jeff Connor, President and owner of Pacific Mobility, who recently presented me with a new overhead lift mechanism, courtesy of Prism Medical. He also brought along his panda to help demonstrate the advantages of an overhead lift and a hygiene sling.
]]>http://lifedisabled.com/2014/10/19/as-long-as-youre-up/feed/1My Spirits Have Been Liftedhttp://lifedisabled.com/2014/10/01/my-spirits-have-been-lifted/
http://lifedisabled.com/2014/10/01/my-spirits-have-been-lifted/#commentsWed, 01 Oct 2014 18:46:04 +0000http://lifedisabled.com/?p=1647[...]]]>As you may know, I recently launched a series of blog posts discussing the benefits of overhead lifts and questioning why assisted-living facilities were not using them in this country. To gather data I had a meeting with the owner of Pacific Mobility (installed my lifts) and representatives of Prism Medical (manufactured my lifts). during the course of the meeting, someone mentioned that Sunrise Senior Living had a policy against lifting residents without mechanical assistance.

As soon as I approached the entrance of Sunrise at La Costa, I knew this was a place I wanted to live.

After the meeting I looked them up and discovered Sunrise was one of the the original assisted living programs for the United States and has grown to about 300 facilities in the US, Canada and Great Britain. Their founders were from Holland and their story is worth reading. You can find it on the Sunrise website.

Sunrise has facilities in the San Diego area that I had previously ruled out because of the locations. However I decided to give Sunrise at La Costa a call. I learned that they that do have a policy against most manual lifting however they use floor lifts to accomplish it. So of course I told them all about the advantages of overhead lifting and directed them to this site. After watching the video and reading my previous post, they decided to ask regional management for permission to give it a try. Hallelujah! They agreed.

Beautiful views of Batiquitos Lagoon are just a few minutes away by wheelchair.

I learned that living here would cost me nearly double what I have been paying at Huntington Manor. But since I had made such an issue of finding another facility that would accept me and my lifts I felt I had no choice but to make the move. I’ve been here several weeks now and am truly enjoying this new environment. For one thing, I am only a 30 minute wheelchair ride from the ocean. For longer trips, the local bus stops right in front every half-hour seven days a week. Also, because I am disabled, I get to ride for free on both the bus and the local rail transit.

In an attempt to make my relatively meager funds hold out, I have taken on two freelance clients. Fortunately since my background is in marketing consultation and writing, I can accomplish both mostly online with the aid of voice recognition.

More news to lift my spirits: Last week, Jeff Conner, the owner of Pacific Mobility stopped by with a free lift, courtesy of Prism Medical and installed the lift along with brand-new batteries.

By the way, this does not mark the end of my series on the advantages of overhead lifts. There are still thousands of assisted living and skilled nursing facilities that have not seen the light. Perhaps even more importantly there are countless caregivers trying to transfer and transport their disabled loved ones without the aid that an overhead lift could provide.

The owner of Huntington Manor was willing to have my ceiling lift installed.

So why aren’t more facilities using them?

A few weeks ago, I decided to find out. It seems that the answer may be very complicated, although, like many questions, money and politics may be at the root of the issue. In the following posts I will share what knowledge I have been able to gain through talking with facilities, manufacturers, and installers. For this first post, I simply want to make everyone understand how simple the process of doing a transfer with an overhead lift can be. Those of you who have followed my blog through the years will recall the nightmare experience I had at a local hospital when they tried to transfer me with brute force. I weigh 220 pounds and it would take a lot of brutes to get me out of my chair.

So please watch the video below with that in mind. It is only four minutes long, because that is as long as it takes a single caregiver to smoothly and safely pick me up from my bed and put me in my wheelchair.

However, I know there are many other factors holding facilities back. Besides money, some are concerned whether it would be safe to install a lift within one of their rooms. I will show the many types of installations and explain that there is one for almost any situation. Others think it would be an expense that they might never recover. There are plenty of case histories to put that fear to rest. Then there is the misperception that most facilities don’t use overhead lifts. While this may be true in California and many other states, it is definitely not true in Europe and Canada. What do they know that we don’t? That will be the focus of one of my articles.

]]>http://lifedisabled.com/2014/07/29/overhead-lifts-save-time-money-patients-nerves-and-caregivers-backs/feed/6An Alternative Wheelchair Control For People with Weak Handshttp://lifedisabled.com/2014/07/19/an-alternative-wheelchair-control/
http://lifedisabled.com/2014/07/19/an-alternative-wheelchair-control/#commentsSat, 19 Jul 2014 20:31:01 +0000http://lifedisabled.com/?p=1627[...]]]>Lately I’ve been getting less joy out of my wheelchair joystick.

As my upper body strength has declined, I have found it more and more difficult to control my wheelchair using a conventional joystick. I am able to maneuver the chair okay but when I first take hold of the joystick I need to sling my arm up and around and let it drop onto the knob. Frequently that results in me jerking the joystick in one direction or another and running my feet into a wall or backing the chair into furniture. A few months ago, my physiatrist at the MDA clinic recommended I be evaluated for an alternative control system. After trying several of them, I decided that my only hope was to try to design one myself. Before I show you my concept, let me explain what I found wrong with all of the others that were available.

The first idea was a micro joystick that would require much less strength to operate. However it had a very short “excursion” in other words the distance from zero movement to full speed was something like 1/10 of an inch. Also, it was designed to be moved with a finger. Those of you with IBM will immediately see the flaws there as our fingers are among the first parts of our bodies to lose strength. I could barely get the wheelchair through the door out of my room to try it out. Even when I tried to use my thumb, the amount of fine motor control needed far exceeded my capabilities.

The next experiment was a device that would be controlled by my chin. Once again my weakness got in the way. If I reclined the chair at all, my head collapsed back into the headrest and I no longer could even reach the chin control, let alone operate it. However this control did have a longer excursion and therefore I was able to at least get the chair out the door but I found it extremely difficult to keep it going in a straight line. Furthermore any distraction to either side that caused me to turn my head also turned the chair. Picture that happening while you’re going down a sidewalk with a steep curb!

There is another type of control that is similar to the chin control and that is a head array. We determined that it would have the same failings as the chin control for me.

There are other, more extreme types of alternative controls such as the sip and puff which uses your breath for control (another of my weaknesses). One that sounded fascinating was a trackpad system which would be very similar to using the mouse on a computer. Hwever it relies on being able to control your fingers which I can’t.

In this proposed control, my thumb rests on a miniaturized joystick. My remaining shoulder muscles would slide my hand forward and back for controlling wheelchair speed while my thumb muscle (the only one left in my hand) would control the direction left and right.

So now we get to my proposed solution. I need a flat panel to rest my hand on when I first reach for the control. I have the most strength in my thumb, so it would be ideal if the joystick were waiting for me near, but slightly forward, of where my thumb would normally rest on the flat panel. I could then make a motion quite similar to the same one I use when I am controlling the mouse on my computer. I have become skilled with those motions out of necessity.

Access Medical sent my design to a company that specializes in making alternative wheelchair controls and I will let you know if they are able to come up with something for me.

The owner of Huntington Manor was willing to have my ceiling lift installed.

I am about to begin some posts on a subject that has been the source of puzzlement to me for some time.

Overhead lifts are widely used throughout Europe and Canada where studies have shown they dramatically reduce resident and caregiver injuries. They also cut labor costs since transfers that normally require two or more caregivers are now safely accomplished with one. Despite this information, the assisted living industry in the United States appears to be intractably opposed to overhead lifts, or for that matter any kind of patient lifts, within their facilities. Asking around I have found that many of the major chains have forbidden facilities from installing these systems. Instead they require the caregivers to do the lifting and repositioning. Some claim that overhead lifts would increase labor costs and lead to more injuries and lawsuits, despite the evidence that the opposite is true.

I am trying to determine why there is such opposition. I’m also trying to learn if the problem is as widespread as I believe. Today I heard from a facility that is part of one of the largest chins in the country. According to the person I spoke with, the decision came from their risk management people. (Unsure whether it is an in-house department or a separate risk management company.)

I need your help. Please comment on this post or my Facebook entry that I have linked to this post and let me know anything you have observed on the subject. I plan to publish the first article around the beginning of next week.

Topics will include:

An overview of the issue.
The types of modern overhead lifts available and how they work.
The myths and truths about overhead lifts.
Examples of the use of overhead lifts in other countries.
Exposing either the ignorance or the lack of concern for patients and caregivers that hinders their use in assisted living facilities in the United States.

If it turns out to be obstruction by either risk management or insurance companies I will address that subject as well.

Life with inclusion body myositis presents some difficult choices. My latest circumstances found me spending lots of time at the local hospital wound care center, buying illegal drugs, and facing long periods of solitary confinement in a 3 foot by 7 foot space. Okay, so I’m exaggerating a little, but we have to make this interesting don’t we?

I’ve been in a wheelchair since 1999 and for the past several years I have not been able to get out of it other than to go to bed or visit the toilet. This means that I am sitting in one position for about 15 hours a day. That is never a good idea even for healthy skin, and my skin is far from healthy. Recently a large area of the region where I sit has lost several layers of skin. The wound care doctor said it was excoriated. This is a fancy word for saying that the skin has been scraped off. It doesn’t feel good, and in fact was at one time a favored form of punishment. The doctor also said the only way to prevent my wound from getting much worse, which could result in surgery and a lengthy hospitalization, was to go straight to bed and stay there. Two hours on one side and then two hours on the other.

This Peruvian skin ointment was the focus of a federal lawsuit.

The doctor also recommended I use a prescription ointment called Xenaderm. It works very well, much better than any of the other ointments or creams I had tried. But when I got the bill from my pharmacy I discovered it is not covered by insurance and costs $31 per tube. A little investigation revealed that the ointment is a Peruvian concoction not approved by the FDA and in fact was the subject of a major lawsuit in Florida. On the other hand, all three wound care physicians recommended it, it works, so I’m using it.

I have been following the bed rest instructions, up to a point, and I’m happy to report my skin is doing much better. However those who know me will guess that I’m not taking this lying down (sorry, couldn’t resist). I am working with my wheelchair provider, MDA doctor and a physical therapist to try to improve my wheelchair seating so I can resume a reasonably normal lifestyle. Right now I am sitting on a custom Ride cushion that cost several thousand dollars and is no longer comfortable. I think that as I have grown weaker my body shape has changed. My weight is still the same, but more of it seems concentrated in the worst possible place. I will record my progress with a new cushion on this blog in the weeks ahead.

]]>http://lifedisabled.com/2014/04/18/excoriation-or-imprisonment/feed/5Bookselling, Dessert and Wound Care.http://lifedisabled.com/2014/03/04/bookselling-dessert-and-wound-care/
http://lifedisabled.com/2014/03/04/bookselling-dessert-and-wound-care/#commentsWed, 05 Mar 2014 00:34:50 +0000http://lifedisabled.com/?p=1589[...]]]>
I was just finishing a follow-up visit at the wound care center, when I mentioned my book to the nurses. One of them asked how much it was and I told her it was $2.99 for the Kindle edition. “Is that too much?” I asked her. “What if it was free?”

“That would make the difference of whether I had dessert with my meal that day,” she said.

“Well in that case, the Kindle edition will be free starting this Thursday for five days.” (One thing I have learned is that it is always important to keep on the good side of your nurses.)

Because I enrolled my book in a program called “Kindle Direct Publishing Select,” I have the option of setting the price for the Kindle edition to “free” for a five day period. They offer this as a way to widen the audience for a book. The downsides are that you lose out on the royalties during this time and you risk getting some unfavorable reviews as people who may not be especially interested in such a narrow topic may feel they didn’t get their “money’s worth.”

I am hoping this promotion will also help expand awareness of inclusion body myositis and myotonic dystrophy. So it is well worth my cost.

If you haven’t want my book yet and if the reason you were holding back was at all related to the cost, please take advantage of this promotion. It starts Thursday, March 6 and ends Monday, March 10. The free book offer is only available for the Kindle edition and not the paperback which will remain available at its regular price of $6.99. (See the link to the left of this post.)

I am supposed to tilt my wheelchair every couple of hours to relieve the pressure where I sit. This past Saturday was a beautiful day (sorry those of you in the rest of the US and UK), so I chose to get horizontal out in the garden. Before I knew it I had dozed off and was awakened when my right arm slipped off the armrest. It was time to get out of the sun anyway so I attempted to raise my arm to the seat controls. I got within an inch or two and then my arm collapsed. So I tried again. No luck. “Well,” I thought, “I’ll rest a few minutes and try harder.”

Still couldn’t get my arm high enough to grab the armrest. By now both arms were becoming sore from dangling and I realized I would never build up enough strength. There are usually a few people wandering around in the garden, but not this day. Surely someone would come soon. After another 30 minutes I realized it was wishful thinking. Then I noticed I was having trouble breathing. My weak diaphragm makes it more difficult to breathe when I am horizontal.

So I tried to yell for help. Now you’re probably thinking (and you would be right), “How can someone with weak breathing muscles do a good job of yelling for help?”

I decided to pace myself and yell for help two or three times every few minutes. After another 15 minutes, I heard lots of excited voices and was soon surrounded by caregivers who restored me to the upright position. It turned out a resident had been enjoying the sun on our patio about 200 feet away, heard me calling, alerted the staff and I was saved!

I wish I could say, “All’s well that ends well,” but not really. Now I know I can’t venture far from the facility on my own if there is any chance I might, through force of habit, tilt my wheelchair.

I often say that inclusion body myositis forces me to rewrite my life’s script. Lately, it seems it’s trying to force me into coming up with an ending.